Is this end of life

[Burlington]

I havent posted for a while and just need to post.

Mum and Dad went into respite care just before christmas 2016 - Dad very poorly with COPD plus lots of other ailments and Mum with Vascular Dementia, blindness, lack of mobility etc. My husband and me just couldnt care for them any longer as it was so stressful. Dad passed away in February 2017 and although a horrid thing to say we honestly thought mum would follow shortly after as they had been married for over 60 years.. However it wasnt her time and she never mentioned him apart from really evil nasty stories which we put down to the dementia.

The stories continued and her mobility declined until March last year when she had a nasty fall and ended up in hospital with a suspected dislocated hip, she was taken to surgery twice for manipulation but this was unsuccessful and because of her being so frail she was sent back to the care home for care but she was bedbound and didnt have any pain which I am very thankful for - not sure how this happens because I had experienced her pain many years ago when her hip was dislocated before - awful experience.

Obviously this was in lock down and although the carehome kept me informed I did not see mum until her 90th birthday in November and I was so shocked. She had lost around 2st was totally disorientated and yelling and wailing as her only form of communication, if that is what it was.

After lockdown I had a visit arranged but I was hospitalised and went to see her 2 weeks ago. Totally different person, was chatty although I couldnt always understand her and she reckoned that I was older than her and she had no children yet - we did laugh.

I went to visit on Monday and was hopeful for a similar visit but it wasnt to be. Although I chatted away with her held her hand she didnt really wake at all - her eyes opened a few times but there was no response to me holding her hand or talking to her.

She is on a soft diet and being spoon fed but is only eating a bit and doesnt always reach her liquid target. Double incontinence and has to be manually moved every few hours just adds to her wows. What quality of life has she got?

I know the string is as long as it wants to be but I am amazed how she keeps going? I guess time will take as long as it wants to continue this horrid life for my mum.

I dont even know what questions I want to ask - just wanted to put this in writing.

 

[canary]

Hi @Burlington
Im sorry to hear about your mum. She is obviously in the final stages, but this does not necessarily mean she is at End of Life. People who are bed bound and not moving much dont actually need much food intake and can therefor go on like this for some time, Im sorry to say. Alternatively, she may reach End of Life quite quickly. Im afraid that there is just no knowing
Oh for a working crystal ball!!!

 

[lemonbalm]

Hello @Burlington
It's incredible how they keep on going! My poor mum (90) has had Covid, survived it but not really recovered, lost her mobility and a great deal of weight, now doubly incontinent and extremely frail, has just been in hospital for 3 days on oxygen where they asked us to come and say our goodbyes (we of course told her she would be better soon). This morning, the hospital said that mum was managing without the oxygen now, had had a bowl of porridge and they plan to transport her back to her care home tomorrow for end of life care. My mother in law was end of life for 2 years and ate nothing but ice cream. My mum varies just like yours too. Some days just moans or shouts and screams, some days a smile and a bit of conversation, even a giggle (those days are incredibly precious, even if the conversation is from a parallel universe).

 

[Burlington]

Thanks for your comments it means so much that others are in the same boat. We just have to take the positive side when we can get it I guess.

 

[lemonbalm]

We do indeed. It's not easy though is it. Most of it is simply heart breaking and I must admit I have wanted it to be over for mum but then, if she seems happy even for a few minutes, I'm glad she's still here. I'll be thinking of you and your mum when I next visit mine. It's good to know you're not alone.

 

[Linton]

Hi. I’ve not posted for ages but now I think my husband, who has LBD, is reaching end of life..he has been in bed with care package in place for a few weeks..then manages a few days ago to get up and walk from room to room, he’s at home, looked much better.Suddenly last two days is back in bed really not fully conscious and not eating or drinking much..also having trouble swallowing and has a chesty cough in the night…should I ring the doctor or just keep him comfortable..the carers come three times a day …such a rollercoaster of emotions..been looking after him for nearly four years and now don’t know what to do…….

 

[canary]

I would contact the doctor @Linton . It may be due to a chest infection and antibiotics will do the trick.
Even if the GP decides that he is at End of Life, they can prescribe medication to keep him pain-free and comfortable - the so called "just in case" box - and can put in motion extra help for you.

 

[lemonbalm]

Oh yes, I agree that you should contact the doctor @Linton . Best to do everything possible to keep him comfortable. Also good to have a second opinion so that you are not trying to cope and make decisions on your own.

 

[Linton]

Thanks for you’re reply..and advicexxx

 

[Burlington]

Just a little update. Mum has been termed End of Life Care for around 3 weeks and her meds have been stopped. Unfortunately this led to much anxiety and vocalisation by Mum (it was awful to hear) so a port was set up by the Single Point team. This was not enough medication to settle mum so last week a syringe driver was fitted and it is replenished every 24 hrs. I can visit pretty much when I want to and the senior staff at the care home are amazing and have kept me informed every step of the way. Mum isnt eating but is still drinking a little when she wants it and half of a bottle of high calorie milk drink (cant think of the name of it sorry). I visited on Friday when the Single Point team arrived and they explained they are giving mum sedation meds to keep her comfortable but have other options to keep mum comfortable should she get upset/agitated. There was no recognition when I spoke to her so I am presuming she is comfortably sedated. I sat with her for a while and chatted about everything and nothing. She looks so peaceful but so poorly and her head and shoulders were cold. I guess its a case of visiting when I can and hoping that when the phone call comes I can get to the be with mum at the end.

I feel bad for hoping it is soon xx

 

[Izzy]

Don’t feel bad @Burlington - that’s very natural, and many of us have felt the same over the years.

Thinking of you and your mum. Wishing you strength.

 

[Duggies-girl]

Don't feel bad @Burlington many of us have felt like that but it is still a shock when it comes.

Thinking of you.

 

[lemonbalm]

It is kindness to wish for this stage to not go on too long @Burlington . I am wishing the same for my own mum. I'm glad to see that your mum is peaceful now and that the staff are taking good care of her.

 

[Burlington]

Mum's still hanging in there. Her syringe driver now has a sedative, pain relief and something to dry up her secretions as she is unable to swallow. She hasnt eaten or drunk anything for 3 days now and is just having her mouth moistened. Her breathing is very shallow and then a few deep breaths. Im trying to visit as much as I can to chat with her and sing to her (she hasnt asked me to stop yet) and treating each visit as if its the last and when Im at home am waiting for the phone to ring.

 

[Shedrech]

a tough time for you both @Burlington

sending much sympathy

 

[lemonbalm]

I'm sure your visits are giving your mum a lot of comfort @Burlington .

My mum looked so peaceful in her sleep during my last visit I just didn't have the heart to wake her.

Sending you virtual strength.

 

[Suze99]

You have my sympathy. A very difficult time for you. Glad your mum is comfortable and well cared for. Take care

 

[Lisaob]

Sending you virtual hugs as this is a difficult time.

 

[Kay.D]

Light and love to you and your beloved Mum. X

 

[Linbrusco]

My sympathies @Burlington
Just been through this with my Mum who passed away in March.
We spent hours every day only to leave at night to go home and sleep, waiting on that call.
The next morning back again.
Mum hung on for 7 days. I wont lie it was awful. I wish she had passed that first few days that the Dr & nursing staff thought was certain.
Her passing was a blessed relief.

In comparison my Dad who had mixed dementia but in the Rest Home, passed away suddenly a month ago. Not exactly in his sleep but was relatively swift, as he had an abdominal aneurysm.
I felt he wanted to spare us and himself the same as Mum.

Hugs & heartfelt wishes to you x